The “graying of America” brings so many issues to light, and for the legions of us, more age-related services will be necessary. The issue on my mind right now has nothing to do with the specifics of ostomy and aging, but more with my general concern about dementia and Alzheimer’s Disease and the effect it has on the family. The onset of symptoms is often quite slow, and therefore, when the family member is no longer able to continue to function as before, it appears they simply “need to try harder.”
“Pay more attention,” I have heard; “You need to care more,” is another common theme, and all of the platitudes that make the afflicted person feel not only less than, but of the expectation that this is their fault, and they simply need to do things differently. When a family member began his slide down this slippery slope of Alzheimer’s, he was instructed to “try harder to take better notes on who called.” That may seem an easy task, but let’s look at what is entailed in “taking better notes.”
This supposedly simple task begins with the person, who we will call Harry, having to hear the phone, which may be a problem if he has a hearing loss and isn’t wearing his aides in the house. This is a common theme, because Harry, like others, doesn’t want to waste his batteries. Then if Harry does hear the phone, he has to answer appropriately, such as “hello” loudly enough to stimulate a response at the other end. Many who suffer from Alzheimer’s have a lack of affect, or are in a depression, so one may forget to say hello. Then Harry has to let the caller know his wife isn’t home. Immediately, he then must be able to pick up paper and pencil and be ready to get the contact information and message…a great deal for someone already lacking confidence. Harry may feel so badly about himself that by the time his wife returns from the supermarket, he is in a failure chain, angry, despondent, and guilty he was unable to handle this “simple” task.
Harry may be capable of doing many things, but his phone-answering skills may be on a much lower par, than perhaps his ability to get dressed if his clothes are put out for him. It is obvious to us, of course, that an answering machine should be used, but Harry’s wife wants to keep him “involved” in doing tasks in the house, another common theme. She is quite able to handle these tasks, so “why can’t he?” Harry’s wife, Sylvia, needs to increase her understanding of Harry’s decline and make the appropriate adjustments, which is, ironically, an extremely difficult task for her to master!
What can we do to increase self-worth in a population that has achieved and succeeded in countless ways? First, we must eliminate the feelings of shame. Shame hurts me so much, because this is a disease or syndrome, and the patient is suffering shame because they are expected or pushed to do something beyond their capability. We have clear expectations of our children’s age-related abilities, careful not to expect more than they are capable of achieving, but humiliate adults with overreaching expectations simply because others are able to do them.
Building Harry’s positive feelings may be a monumental task, and I know how demanding it may be, but there are resources available, and we must be up to the task of reaching out…do it with an open heart, and an appreciation for all of times when each of you were there for each other. And please go with your instinct…if after researching dementia and Alzheimer’s Disease you believe your loved one has something else going on, be a good detective, and pursue it. There are a myriad of reasons for symptoms, so do some digging. Last week we discussed vitamin deficiency, and we have looked at dehydration. Check out normal pressure hydrocephalus and other neurological disorders that may mimic those of dementia and Alzheimer’s.
Sadly, I could write the book on Alzheimer’s. It is a horrible illness and living with someone who has it is totally devastating to the caregiver.